The Waiting List, Part 2

The Waiting List: The Pursuit of Home and Community-Based Care

An Aging Father, A Daughter in her Prime

This post is part of an educational series exploring Medicaid waivers and the challenges people with I/DD face when trying to secure Medicaid funding for home and community-based care.

As noted in “The Waiting List, Part 1,” there are more than 428,000 people with intellectual and developmental disabilities (I/DD) on Medicaid waiver waiting lists across the country.

This figure becomes particularly troubling when coupled with the knowledge that more than 70 percent of people with I/DD live at home with a family member, many of whom are aging and may soon need long-term care themselves.

In fact, more than 852,000 people with I/DD live with caregivers over the age of 60.

Chip Miller is one of these aging caregivers.

A recent widower, 70-year-old Chip is the primary caregiver for his 34-year-old daughter, Bess, who is currently seeking Mosaic services. 

852,000 with I/DD live with aging caregiverOutside of a year and a half in a residential setting in Kansas, Bess has lived at home with her parents. Her departure from services in Kansas was the result of the family moving to Iowa, the third state Bess has called home in her lifetime.

Chip said moving across state borders multiple times has opened his eyes to the differences that exist when trying to access services.

“Bess was born in Indiana,” he said. “Services there start at birth. But in Kansas that’s not true.”

Having recently received a Medicaid waiver in Iowa – after spending a year on the waiting list and even more time getting on the list in the first place – Chip said, “The state of Iowa has a long way to go.”

“The process was easier and smoother in Kansas,” he explained. “We moved through the system quicker without changing our point of contact and facing delays at each step. The process in Iowa is time-consuming and confusing. I was bounced around from office to office. You talk to so many different contacts relative to services, but no one actually knows the process from beginning to end and can explain the nuances.”

Chip said he and his wife began looking into Medicaid waivers for Bess several years ago, but his wife’s unexpected cancer diagnosis put a hold on their plans.

“We started looking into waivers five years ago, but my wife postponed everything,” he said. “When her health declined, she needed her daughter with her. From that point on, Bess had no contact with people outside the home.”

Though he said it’s an emotional topic, Chip said he acknowledges that establishing care for Bess outside the home is vital.

“It’s a hard thing to talk about because it’s such an emotional thing,” he said. “Getting the waiver means she’ll have care after I’m gone. I’m 70 years old, and I’ve reached my limit. I’ve accepted the responsibility for a lot of years. Right now, she’s isolated from the community. She needs more stimulation. When she gets out of the house, I think she’ll thrive.”

Medicaid funding is necessary.

“Medicaid funding is absolutely necessary,” Chip added. “She would not be able to survive without it. She has years to live beyond what I can provide.”

Now that they’ve secured a waiver, Chip and Bess are currently looking for the best provider within a 45-mile radius of their home.

In many respects, this leg of the journey is also a waiting game.

“I reached out to Mosaic and three other agencies at the same time last May,” Chip said. “One never contacted us. One said ‘No, we’re full.’ One I had a little contact with, but now they’re not replying. Mosaic has been the most responsive. There are four possible placements for Bess at Mosaic, but there are currently no vacancies.”

“We’re really excited about the last house we saw,” he added.

Given his recent experience, Chip advises other parents in his position to find a mentor.

“As a parent, you’ll do anything for your child,” he said. “But the process could be a lot easier. Talk to another parent who has gone through this. It will help a lot.”

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